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you sound a lot like me right now. i'm 25. hopefully i can make it in my 50s before i need a transplant.
all the older males here with kids, i assume you didn't have kids the natural way?
i've been going there all my life and have always been treated well. i emailed the nurses last thursday because i wasn't feeling the best and they got me an appointment that tuesday. doing a PICC line this friday. they are always fast and make the time to see me. my next appointment is the day...
happened to me last year. finished 2 weeks of IVs, coughed up a ton of blood. the second time it was so bad i called 911 and was flown to a hospital where i got an embolization.
how is it nearly impossible to get an appointment? just call them and schedule one. i can usually get one in a week, and they always wanted to see me every 3 months. are you sure this was the CF clinic at hopkins? does not sound like them at all.
sorry to hijack, but at what point do they put you on the list? a certain FEV1 %? also, when you are on the anti-rejection meds, do you get sick easily?
really hope there is something for f508 soon because that sounds incredible. i am at 41% FEV1 now and going to 70 would be fantastic. need to get in the gym more. i would also love to cough a lot less too.
i'm the same as you almost, and i'm 25. my voice is not deep at all, my friend calls it angelic, lol. hard for me to grow facial hair, and i have 'womenly' features. i have been tested for low testosterone though so i am thinking about taking shots to bump it up. i do stare at guys and girls...
do you press mute when you cough? i had a job at a call center too. no one seemed to mind. i left to become a hardware engineer, but only because i have a degree.
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